I’m Not Living A Life That I Should Be Living

“I can’t stress enough how devastating lipodystrophy is and how much your life changes because of it.”

Mark forces himself to leave his Boston apartment each day, just to visit Dunkin’ Donuts. He knows it’s unhealthy to live like a recluse, but the 10-minute walk feels like a 10-mile journey because of the way people react to Mark’s appearance: a construction worker near the Filene’s building calls him a freak; at the Park Street T stop, a woman refers to him as a monster.

Every lingering look and overheard comment lands like a punch. “It’s so discouraging,” Mark says, “It just makes me want to go home again and not deal.”

For 10 years, Mark has suffered from lipodystrophy, which has given him a large fat pad on the back of his neck (“buffalo hump”), significant fat around his neck and underneath his chin, and significant fat accumulation in his torso. His cheeks and temples are sunken from the loss of fat in his face.

Mark’s lipodystrophy has also led to chronic depression. Seeing his reflection in a window, he says, is “almost sickening.” Mark has contemplated suicide. His support group for HIV-positive men helps him cope better with his condition.

Mark, 57, also suffers physically. He can’t look over his shoulder or sleep comfortably. He has two compressed discs in his spine. The concentration of weight in his torso, neck and back causes his hips to ache when he walks. He stopped volunteering at a senior lunch program – one of his few social outlets – because he couldn’t manage physical demands like setting up tables.

Like others with lipodystrophy, Mark has had trouble getting treatment. MassHealth refused to cover liposuction surgery to repair his lipodystrophy.

Mark thinks about how if his lipodystrophy was alleviated he’d visit his brother and nephew in New York and spend Thanksgiving with his extended family; he could volunteer again at the senior center; he’d go to the movies and wouldn’t feel ashamed to be in public.

“Such a burden would be lifted from me,” Mark says.

“I can’t stress enough how devastating lipodystrophy is and how much your life changes because of it,” he says. “I know how much I stay in and I know how much of an effort it is just to drag myself outside. I’m not living a life that I should be living.”